HUNDREDS of boys living with Duchenne Muscular Dystrophy, their families and supporters are to lobby politicians at Holyrood on June 6.
Charity Action Duchenne has organised the lobby to demand match funding for its research programme, the provision of specialised research centres, and more support for sufferers.
Duchenne Muscular Dystrophy is a severe, fatal muscle wasting disease that affects mostly males. Sufferers are usually diagnosed by the age of five and, without good medical intervention, rarely live beyond their late teens and 20s.
One of those joining the lobby will be John Miller from Blackford, whose grandson Lee, 13, has the condition.
He said: “I have seen a marked improvement in treatment and support for Duchenne patients over the last four years. However, we need to continue this improvement, particularly in the field of research.
“There is a fund of £12 million that has been allocated to projects by the Scottish parliament and we are requesting that some of the fund is allocated to the AAV U7 trial currently taking place at Royal Holloway, which looks promising.”